Just Keep Swimming

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I’ve spent the last five days or so sleeping for at least half the day, and I’m still exhausted. I just don’t have the strength nor energy to do many of the things I want to do. I really have to think about what I want to accomplish and where I can spend my energy. If a conversation runs over, so long bath! My daughter had a panic attack this morning and I am pretty much done for.

My husband has this idea in his head that I’m bored. Nothing could be further from the truth! I have lists of things I want to do! I have makeup looks I want to do, books unread and stacked, waiting, crochet projects, movies to be watched, blog posts to write, friends to chat with! As it is, I am busy from morning until night when I have the energy. I can’t seem to convince him, and it makes me so sad.

My neck is so bothersome I just can’t take it. I move wrong and I have intense pain. I don’t know what to do about it. I’m waiting for my doctor appointment in six weeks. Hell, I have pain when I don’t move. I’ve considered going to the hospital, but really, what can they do? My abdomen is also giving me incredible pain. I’ve run out of the higher THC mmj my doc prescribed. I only vaped extra once, so that doesn’t work. I ordered yesterday, so yay.

Good news, I broke 200 lbs! I’m 198 now. I don’t really know how to stop this. I guess I will stop when I’m there? I’m eating what I can, not trying so hard.

Going to try a nap for a couple hours, then try and put a face together, because it’s fun! 😀

Hope you’re having a good day, Zebras!

Drowning in Exhaustion

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My migraine finally broke last night, but it’s been flirting around the edges of my brain, threatening to return with one wrong move.

Every day I start out happy and full of promise. With pain, of course, but I have plans for things to do, and stuff I want to accomplish! Soon, though, I’m worn out and wondering how much I can still push through. Trouble is, when I’m trying to take photos of the makeup I’ve accomplished, you can see the pain in my face if I push it too much. I suppose it’s a way of keeping me from too much.

I finally had a full bath today, instead of a sponge bath. It’s been tough to get in there, I’m so cold all the time. I feel better now. It took me ten minutes just to get warm. My lovely daughter babysat. I need help running the bath, and I like someone to stay on the second floor with me, so when I get out, in case I slip they can help. I’ve got such great kids. They don’t complain much.

My husband has been so exhausted lately. I miss him. I could barely speak when he came to bed last night. There are so many things I want to do with him (that too) but I’d like to start with a hug, or putting my head on his chest. I can’t get close enough to him yet. I’m too sore. He’s too stressed. The other day my daughter noticed a pair of my underwear that must have fallen when my husband went to put laundry away. It was kind of near the bed, not really obvious. She handed them to me, to which I cheekily replied, “oh, there those are! Wild night last night!” She’s 15, our bedroom doesn’t have a door and is right next to her bedroom. She gave me the ‘yeah, right’ face. 😂

Okay, trying to catch up with everyone. I’m thinking of you!

Have a wonderful evening, Zebras! 😘

 

 

Stumbling Around in the Light

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Good God I’m tired. I woke up this morning feeling well. I had energy. I made plans! I finished my vaping and decided to call my Mom as I hadn’t called her in ages. Halfway through the call, I lost all my energy. It just disappeared. I was so disappointed.  I had planned to do some fun makeup things, prep for Instagram and my Beauty Blog. It was not meant to be. I ended up trying to cry, but I was too tired to produce tears.

I had another three hour nap this afternoon. I put on some golf to listen to, and was out.

So I’m currently sitting amongst makeup detritus, waiting for my husband to come to bed so we can snuggle and I can go to sleep again.

I picked up a phone message yesterday and it seems my gastroenterologist from hell retired at the end of March. Everyone knew this but me, apparently, I guess I was trying too hard to stay upright I didn’t see the signs posted in the office, and husband didn’t mention it. I’m annoyed and relieved. It explains why he gave no fucks. Likely why he wasn’t interested in a long term patient. Let’s start over, shall we? Sounds like fun.

I have so much to do, so much to say, stuff to do, and zero energy. Ugh.

Is there such a thing as like medicinal energy drinks? Medicinal meth? In my day it was cocaine I guess. I was thinking, what speeds you up? Speed?  Lol. I’m soo into drug culture, can you tell? I had a friend who used to show up with pot in high school. Perfect with the pain of my menstrual cramps, we now know I have endometriosis, but that’s all the unprescribed drugs I took. I can feel crappy all on my own.

One Facebook friend? had a status today that read 90% of illness is emotionally related. 😂😂😂

I read one of those anecdote collection of medical stories, and it told of this one student who was sitting behind another student who pulled out a bottle of Tylenol and counted out 8 pills and went to swallow them before he stopped her and asked what she was doing. She said her pain was at an 8, so she was taking 8 tablets. That’s why doctors ask you to rate your pain out of 10, right? 😮 Scary.

Okay. I’m worn out. My hands are feeling good from all the rest, they’re just cold! 🙂

Have a lovely evening, my Zebras! 😘

 

My Life as a Spoonie

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I go through these periods where I am just exhausted all the time. It happened yesterday. I lay down for two hours. Slept right through my alarm, and my family woke me up at 7:00 to have cake. Mmmm cake! There is an illness called Sleeping Beauty Syndrome. I’ve often wondered if I have a variant of it.

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Cake!

My day typically looks like this:

  • Wake up at 6:00 am, hit the snooze for half an hour.
  • 6:30, washroom
  • Answer any questions or comments on Instagram and post until 7:00.
  • 7:00 am take medication. 13 pills. One mouthful.
  • Post on my Beauty Blog usually until 9:00 am.
  • Between 7 and 9 am, have coffee and oatmeal delivered by husband and daughter, coax son into going to school, monitor progress by text, and monitor daughter’s progress by text.
  • 9:00 am vape marijuana. While perusing Facebook and catching up with friends. Talking on phone, reading email, texting husband. Online shopping.
  • 11:00 start thinking about the EDS Chronicles.
  • 12:00 lunch and blogging. Lunch has been left for me by my husband. 1 oz of Lactose free cheese and some gluten-free crackers. I hate eating. I have cookies, too.
  • 1:00 my post is usually up, lunch is done. Here is where I either nap for a couple of hours or do something else. If the pain is bad, I sleep. I try to play with stuff for Instagram or my Beauty Blog. I want to read, too. But my concentration has been awful.
  • 3:00 Dr. Phil. I watch the first five minutes, call him a quack and tune out. Time for pills.
  • 4:00 sometimes my boy comes up and watches the Simpsons with me.
  • 6:00 is pill time.
  • 6:30 Husband is usually home around now. I’m still stuck in bed. Daughter rules downstairs, she just feels like she needs her space, and it’s so uncomfortable for me, so tough to get down there, it’s not worth it.
  • Between 8:00 and 9:00 I get the pictures for the next day ready.
  • Husband comes to bed around 9:00 and we have time together. It’s also melatonin time and time for marijuana oil.
  • 10:00 last pills of the day. I usually read a few last articles and then put my arm brace, mouth guard, and CPAP on and by 10:30 I’m out.

It’s been good not sleeping as much. I used to sleep all day almost every day. I was afraid I would never get enough rest. But I was tired all the time, anyway. This is different, though. This morning, I woke up and I couldn’t uncurl. I couldn’t straighten up. My abdominal pain is just so bad. My back pain. Maybe I’m having a childbirth flashback? 😂 since it was my daughter’s birthday yesterday!

I pause a lot for rest and breaks in everything I do. I have cramps, my hands hurt. Things work out if I work to my limit and go slowly, but all it takes is one day to mess it up. One day where I want to go out. Then I am in bed for a week. I can’t do anything. In fact, I’m feeling the strain of the other blog. I’m just having so much fun, though. Why can’t I keep anything?

I’m supposed to meet my friend tomorrow.  I hope she’s okay hanging here. I’m hurty. I’m still going to try to bathe. I have a sore on my hip. I find I get them even if I’m clean. It’s from skin rubbing together, right? They smell awful. I have cream. Ugh. I don’t have a lot of hanging skin from losing weight, but when stuck in bed, you get squished a lot.

My husband was super sweet the other day. I nearly had a conniption because Shoppers Drug Mart, a drugstore here in Canada, is now carrying Pixi Beauty! It’s a super high end drugstore, without high prices. It’s amazing. Anyway, we were having an ice storm here in Toronto, and they had stopped the streetcars, so he had walked partway from work, feeling terrible because he’s on steroids for his eyes, and he stops at the store whilst waiting for the bus and texts me asking what I want. So we settle on quite a few things,

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What darling husband bought for me $124 CDN

After the excursion, and he at first found the makeup, and he persevered and found the skincare, he just missed the bus and had to wait 30 minutes for another. What a sweetheart. He needs to do so much for me. Like cooking my dinner. Bringing it to me. Getting my clothes out for me when I go out. I don’t know what I would do without him. He’s also my very best friend. Imagine that!

I was too tired to eat dinner last night. I had just woken up from a nap, and I was still too tired. My back is killing me.

My husband had glaucoma and cataracts last year and needed surgery. He’s only 48. He’s had a bad infection that started before the surgery, they had it under control with steroids, but as soon as he went off them, it came back. Now he’s on super strong steroids and doesn’t feel well. He was complaining he didn’t like the general feeling of unwellness and achiness all the time. I just looked at him and he apologised! I laughed. It’s fine. It isn’t fun. Poor guy.

Be well, my zebras! 😘